Fibroscan results

[Ruby1960]

Hi everyone. I have been diagnosed with cirrhosis by fibroscan. Following some blood tests last year I was found to have Hep C. Thankfully, after treatment I have now been given the all clear. As the doctors were fairly sure that I got the virus following a blood transfusion I was approved for stage 1 payments from the infected blood scheme. I was advised to apply for stage 2 payments as I have liver damage. They have asked for results of my fibroscan and are questioning my diagnosis!! Although I would love to believe that it is all a big mistake and I have not got cirrhosis, I find it hard to believe that doctors would make such an error. Can anyone on here advice? How reliable are fibroscans? Or is it just a ploy to avoid paying me compensation?

[Richard-Allen]

Ruby, have you been having six monthly MRI scans? This should be normal practice for someone with cirrhosis. If this is the case, then copies of these scans would be the property of the NHS Trust that took them. They would have to be requested, and your permission to share would be needed.

If you've not been having six monthly Monthly scans then you need to find out why not. Regular scans are required as its possible for tumours to start to develop. Although these may be quite harmless, they need to be identified as quickly as possible.

Good luck with this.

Richard.

[AyrshireK in reply to Richard-Allen]

Hi Richard, just to clarify it doesn't have to be an MRI scan every 6 months - standard practice and NICE guidelines only intimate an ultrasound every 6 months and that has certainly been the pattern of hubbies monitoring since April 2012. Hubby has only ever had 6 monthly ultrasound and the only MRI he's ever had was to follow up some lesions that appeared on the ultrasound. A couple of times now you've asked posters if they have had 6 monthly MRI's and it could perhaps make posters feel they've been getting substandard care if it hasn't been an MRI they've had.

Hope you don't mind me clarifying.

Cheers

Katie

[Richard-Allen in reply to AyrshireK]

Hi Katie, l was under the impression that an MRI with contrast was used to identify small tumours.

I suspect that an ultrasound may pick up on a possible larger tumour, and a MRI may then be called for to identify smaller ones. But either way regular scans should also be carried out as a matter of course.

I can't remember exactly which scan first identified my tumours. But l was referred to a liver cancer consultant down at the QE. I had t five tumours in all, three were dealt with, and the remaining two tumours were left to grow bigger. These tumours turned out to be benign.

Hope all is well for both you and hubby up north.

[Ruby1960 in reply to Richard-Allen]

Yes, I will be having 6 monthly checks. It’s the EIBSS that are questioning the reliability of the fibroscan diagnosis. I was just hoping someone on here had information regarding this issue.Thanks

[Kristian in reply to Ruby1960]

I think others have pointed out previously that fibroscan can have its frailties and can be swayed by operator error. However, in the main its a reasonable indicator and can be considered a reliable enough non-invasive test in most circumstances. Indeed, it seems to be a more commonly used test nowadays.

[Ruby1960 in reply to Kristian]

Thank you for replying. My doctor seemed fairly confident with the result, it’s the people from EIBSS that are questioning it. I could understand if I was borderline but score was 21.5kpa. I realise that it may have come down after completing the Hep C treatment but I doubt it will be down to normal levels, sadly.Anne

[AyrshireK in reply to Richard-Allen]

Routine 6 month screening is only usually an ultrasound.

NICE states :- Hepatocellular carcinoma

1.2.4 Offer ultrasound (with or without measurement of serum alpha‑fetoprotein) every 6 months as surveillance for hepatocellular carcinoma (HCC) for people with cirrhosis who do not have hepatitis B virus infection.

Like I say hubby has only ever had one MRI and that was to follow up a lesion discovered on u/s.

Both doing ok cheers.

[Lantana100 in reply to AyrshireK]

Yes my husband has compensated cirrhosis and he also has 6 monthly ultrasounds and serum alpha fetoprotein assessment together with the LFT panel. He has never had an ultrasound although he did have a contrast CT scan when first diagnosed in the hospital.

[Lantana100 in reply to Lantana100]

I mean he has never had an MRI - sorry!

[Lindc]

Hello Ruby, I was found to have cirrhosis during an op to remove my gall bladder in June 2018. I have since, and still have, no signs or symptoms, thank goodness. However, a couple of months ago I had a first fibroscan of 29, which I have read should put me in decompensated territory. I have not had an ultrsound for a year and no consultant appointment either but have had bloods with ok results done a month ago. I have recently moved from the Isle of Wight to Herefordshire and am due to have a telephone chat with a doctor from my new surgery next Monday. I am 75, feel fit, am not overweight, have type 2 diabetes and, of course, have had not a drop of alcohol since diagnosis (and not much before). So, I am definitely hoping that my fibroscan was not right! Linda

[twice-over]

Hi. Sorry you’re going through this. I know how hard it is I went though something similar with my dad to get him the benefits he was entitled to. Unfortunately the “proof” they want is overwhelming. My dad died 4 years ago and 2 years ago to my horror my mum was diagnosed with non alcoholic cirrhosis her fibroscan reading was 21.5 but this year after changing her diet and exercise and losing 3 stone her lasted fibroscan reading was 7. The royal free hep team have been fantastic and she will still continue to have appointments and scans for life.

[Ruby1960 in reply to twice-over]

Thank you for your reply. Sorry to hear about your parents, hope your mum continues to improve. That’s a massive drop in the fibroscan reading, hope mine goes that way. In my case the only thing I could do was to stop drinking. I’m not particularly overweight, walk 3/4 miles every day with my dogs and have a fairly healthy diet. It’s one of the reasons I’m so frustrated with the EIBSS. They have accepted that I got the hep c from infected blood but are questioning the cirrhosis diagnosis! Take care.

[twice-over in reply to Ruby1960]

Thank you. I hope it works out for you. Hopefully once they repeat your scan things would have improved. Take care.